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Four Questions to Consider When Choosing a Cremation Urn February 5, 2016

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How to choose a cremation urnOne thing some people would prefer not talking about, is what’s to be done with their body after passing away. It’s a hard one to bring up, especially when caregiving. Some people already have this worked out from birth, while others are still mulling it over. Kris was very forthright about talking about it, and I really admired her fearlessness for that. One part of that discussion was of course deciding whether to be buried or cremated. That was pretty easy because she already knew what she wanted – cremation. Slightly more ambiguous was whether she wanted her ashes scattered or buried and where. The final decision was a combo of scattering and burial; half the ashes were to be scattered in our favorite hiking area outside of Las Vegas, and the other half was to be buried at a family plot in Minneapolis.

We didn’t know exactly how to shop for something like this so first we tried to work it out at the funeral home. They attempted to sell us something quite expensive but we decided on buying a scattering tube that seemed appropriate and fairly priced. We then bought another urn for burial from an on-line site. It took me days to select something online because there were so many urns of different shapes, sizes, colors, materials and purposes. On top of that I didn’t know which vendor to trust. The variety was blinding, much like walking into a North Minnesota blizzard.

Now that I am running an online cremation urn website (is that irony?), I not only have my own experience but hear from many customers facing the same thing I did. I find they are as confused as I was and consequently we spend a lot of time educating when people call in for help.

There are 4 main questions to answer in selecting a cremation urn. Answering these questions will cut through the clutter while saving you time and money. (more…)

Four Years On October 20, 2015

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kris markerWhen it reaches this time of year the air is chilly and the sun rises much later than the summer months. The dark, cold mornings sends me back four years as if it were yesterday. I can feel the heightened sense of awareness I had and the anticipation that something so profound is taking place that it is forever irreversible. The exact emotions from those four year old mornings still come back. They are intimate friends who visit the same time each year, and unlike me, they don’t seem to age.

It’s hard to believe that last Sunday was four years since Kris’ departure. Time goes so quickly and comprehension takes so long. On this “passing” anniversary I took the day to be alone, to reflect, visit the site where we buried part of her ashes and read the journal which I began writing the morning she left. Believe it or not, I had a great day.

On one hand, what’s to understand other than we are all coming and going? This “coming and going” cycle has been happening for quite a long time and it’s absolutely nothing new or surprising. We see it all around us. Yet it is surprising when it hits home. It is an abrupt ceasing of a continuum with no reset or rewind button. Even old acquaintances who I don’t particularly like, and have no interest in seeing, can be reached through Facebook. Not Kris. There’s something terribly ironic about that for me.

I saw an article recently about a young woman, overcome by cancer, who was going to have her brain preserved through cryogenics with the hope they could bring her back one day. I know that’s an unusual enough story to grab a lot of attention. But what really got to me was the photo of her and her husband on a mattress laid out on the floor.  She is on her back covered to above the waist with a blanket and dressed in pj’s. The picture caption says it was taken during the last days of her existence.

She seems to be very withdrawn and in a state I recognize from having watched Kris. He is slightly curled up fetal style next to her with his head resting on, or next to, her covered legs. He is looking up towards her face and clutches the blanket by her waist as if trying to hold her back from going somewhere. There is a sad beauty to this photo. The caregiver husband is helpless except to be there, be loving and execute his wife’s wishes. He has to witness it all and remain behind to remember what he saw and how he participated. I just loved how he managed to stay close to her during this winding down phase.

What most people in an end-of-life caregiving situation don’t realize (unless they’ve been through it before) is that as hard as the caregiving may be, something more difficult is just down the road – the aftermath. I remember the hospice nurse telling me many times, “Ira, be ready for when this is over. It will come as a jolt.” Though this didn’t resonate for me at the time, she was right. The hardest part has been afterwards. Why? Oh man, there are just so many reasons. But what makes these reasons particularly tough is they go on and on. Unlike us humans, these reasons die hard. I’m sure some can persist for the rest of a person’s life.

The American Cancer Society’s Behavioral Research Center conducted an 8-year study called the American Cancer Society National Quality of Life Survey for Caregivers. They began the study in 2002. It is the largest nationwide, long-term study of its kind. I recommend reading about the results. One of the findings said that, “caregivers may have unrealistic expectations: Some cancer caregivers feel they should be doing more than is realistic, creating a sense of guilt, which is linked to an overall poorer quality of life.”

I’m sure we all know this but it’s great to hear it coming out of such an extensive survey. It’s very easy when caregiving to lose sight of ourselves and get overwhelmed. We can ourselves get sick, irritable and maybe find ourselves not be able to do anything at all. Still, it’s hard to consider taking time away and regrouping, especially if you are taking care of someone at home. But the guilt doesn’t go away when all is finished, it just morphs into something new; “Oh, only if I had….”.

Another finding in the study I found interesting was the difference between husband caregivers and wife caregivers. Rachel Cannady, one of the lead research scientists on the study, commented that, “Men tend to be ‘fixers’ when things aren’t right, so when a husband sees his wife struggling with cancer, he might try to fix the situation rather than help her adjust to it. Husband caregivers would benefit from interventions that educate them on how to cope with their wife’s distress around having cancer.”

Wow, I wish I had read that early on. There was probably a lot more ground to cover than I was comfortable to venture in to with Kris. As a matter of fact, I’m certain there was – and that continues to be a sore point for me. It’s one thing to feel some guilt while caregiving, but it doesn’t stop there. I can think of so many things now I could have done to make her existence better, like talking to her more. But at the time I could only see the obvious day to day needs like making sure the meds were taken, she was free from pain and that I had a big supply of mashed potatoes (she loved eating mashed potatoes during her final weeks). The less obvious was harder to get to.  So, though I am having such great ideas now, there is nothing to do with them. Maybe I’ll end up in another caregiving situation and will be that much wiser.

There is a lot of great material out there for caregivers about this. As I’ve mentioned before, I’m currently quite fond of the work of Atul Gawande. He takes the business of elder care and dying to a level of humanity that is so valuable not only for the person being cared for but also for the caregiver. It’s a lot better to be conscious during the entire episode and not have to live with reviewing what happened over and over again. It’s far better to be well informed and have some insights as to what our loved ones may be going through not only physically, but mentally and emotionally. For them it would translate into a  better transition. And for those of us who remain behind we might remember the natural beauty of how a loved one left our world and the small but important part we played in it.

Caregiving: Stress Ending in Magic July 26, 2015

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OLYMPUS DIGITAL CAMERA

Kris With Close Family Friends

I recently conducted a focus group with people who are, or have been, non-professional caregivers. The purpose of the group was to get some information to help with the development of a program that I believe will bring a great deal of comfort and strength to the caregiving community.
Getting together with a group like this can be quite an emotional experience. It goes deep. What was most surprising to me was the way we went from looking at what made caregiving so stressful to discussing how positively our lives were affected in the process.

The people in this group were varied in background and situation, but all had experienced caregiving someone dear to them. A few of them were taking care of elderly parents who were well into their 90’s. One had been the caregiver for her parents and 2 siblings losing them all in less than a year, while others were primary caregivers for a spouse who passed away from cancer.

The first thing I asked the group was what they found to be the most stressful part of caregiving. It was as if I had thrown a match into a room filled with gasoline.

For one participant, the biggest stress was battling her own ailments while caregiving. She was so tired from her poor physical condition that she was on the verge of collapse. To make matters worse, when she discussed this with a doctor he chided her and made her feel guilty. Realizing she had to do something she saved herself by taking a break for a few days while her parent was cared for in a hospice facility. This allowed her a chance to rest and regain some sanity. But even so, it was a struggle to allow herself this needed respite because of the guilt associated with not being up to the task of going non-stop.

Another person talked about the emotional drain. Being at the hospital at all hours and working through restlessness and exhaustion often made it a challenge to be at the top of his ability to give. “The hardest part was just trying to get some rest.” He told the group.

One commented, “Don’t ever say ‘It can’t get worse’, because it can and does. When others are asking if you’re eating, sleeping or getting a little time away the answer is ‘No, I’m not. I can’t.’”

And then there’s the coping with the person who’s dying. Many talked about the stress of working around their loved one’s moods, the affects of medication and a stubbornness to stay independent, even if it meant great danger. “These things will scar you. The dying person may hide their pain so as not to burden you. The person’s denial, can cause fights. I had to sneak on the phone to call the nurse and then go through more fighting as a result. But this is how it is.”

Another commented, “It’s like you are putting them through an inquisition – ‘what is your pain level? How much does it hurt?’ They will tell you everything is okay, it’s not so bad. Then you go to the hospital and once they are with the doctor or nurse you find out pain is worse than they were willing to admit.”

“I fear my mom could fall and be by herself.” one caregiver chimed in. “I see she is losing her memory but she doesn’t believe it and continues to do things that she promised she would stop doing. I worry all the time.”

Yet as stressful as all this sounds there was also something profound coming out of the experience. When I asked them what it was they learned about themselves I thought I had walked into a different room altogether. Here are some quotes from the participants:

One person begain with, “I was very strong to begin with but got stronger and stronger based on the strength I had developed while my wife was dying. Another said, “It’s a humbling experience. I learned about life.”

“I had been sitting with my younger sister for sixteen hours or more before she died. I helped put the body in the bag when the funeral home came to pick it up. I helped put her in the van. I felt a sense that I had done everything that I could have done for her and there was a beautiful feeling of relief. Although I’ve been a spiritual person I don’t know what other experience would have taught me that.”

“I have found a sense of humor. I see blessings and I am grateful for that. My mom told me while dying that if she didn’t have so many things wrong with her she’d be in great shape.”

“I came not to care what anyone else thinks, and to enact the decision at the time that I think is right, and to live with it. Just do it, and don’t worry about what everyone else thinks.”

“What an amazing gift to be able to be there for someone, it’s a privilege to do that for someone. It’s also a need, to be able to give of myself in that way.”

I always find there’s something special about having a conversation with other people who are caregivers or went through an end-of-life caregiving process with a loved one. It touches a nerve and everyone has so much to express. Perhaps through caregiving and being part of a loved one passing we become aware of the fact that there’s magic embedded in life that we take for granted. It’s when we see the process of someone close to us leaving this world we witness the magical power of nature that even doctors and our greatest scientists can’t fully explain. Death is uncompromisingly impartial.  We see it. We live through it, we don’t understand it – but it’s real. It’s not a movie. And it wakes us up. The only thing I’ve seen comparable, but with it’s own nature, is on the other side of the equation – someone coming into this world. A story that’s waiting to be lived, loved and told.

The Era of Aging Caregivers? July 12, 2015

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Elderly CaregiversAn article caught my attention in the New York Times recently about the aging of non-paid caregivers (More Caregivers are no Spring Chickens) .  A study cited in the article claimed there were as many as 7% non-paid caregivers over the age of 75. That doesn’t sound like many people until you learn there are some  50 million non-paid caregivers in the US. That 7% equates to about 3+ million caregivers over the age of 75. That’s astounding.

I’ve been hearing from a lot of friends and acquaintances about their aging parents still living into their late 80’s to late 90’s. I see a lot of them in Facebook photos together celebrating another 90+ birthday and still looking pretty good. One person employed at my business just lost her uncle who was 108. Despite his age he was very clear about choosing his own cremation urn before passing away and managed to do so just days before going.

It’s no illusion; people are living longer. “Life expectancy has been increasing pretty steadily for the last 50 years or so,” said Robert Anderson, chief of the Mortality Statistics Branch at the CDC’s National Center for Health Statistics who released a study on aging in 2014. The question I have to ask after reading that is “what about the quality of life for the elderly?”

Let’s face it, as one gets older things break down. There’s no getting around it. Even though healthy living can slow the process it can’t stop it altogether, ultimately we are overcome. Reports by the National Health Interview Survey and the Health and Retirement Study show that with increased age the quality of health in the aged has not improved. Diabetes alone is now affecting an increasingly greater part of the population especially seniors 65 and older. A whopping 26% have diabetes according to the ADA (diagnosed and undiagnosed). This makes me believe that there’s some serious care giving ahead – if it hasn’t hit us full force already.

With an aging population that’s living longer, it’s logical to conclude that those of us who end up in care giving situations will find ourselves doing it at a more advanced age as well. I can’t help but think of my own experience. I can’t really say it was strenuous for me because I felt as if I were on a mission and was energized in a way I had not experienced before. Plus, I wasn’t really that old (although Millennials may argue that point).  It wasn’t until after Kris’ passing that the emotional and physical strain hit me like a sledge hammer.

Still, even though I had been working out regularly and was in reasonable shape for someone in his 60’s, one day I threw my back out when attempting to move Kris. I was simply lifting her legs. At that time she was down to about 90 pounds, so this wasn’t a strenuous move.  I did my best to ignore the pain, but it was sharp and persisted right up through her last days. Caregiving can get pretty physical.

I can’t imagine how I could have been as attentive as I was if I had in poor health taking loads of medication of my own.  Having hospice services was a major relief in the process, but the nurses don’t come over to your home the entire day. They will come to check in once a day and stay for about an hour. They’ll also come if it’s something important you need help with. Someone will come over several times a week to help clean your loved one, make sure the bed has new sheets and so on. Other services require finding a good person or organization, which costs extra. Outside of the hospice, finding the right people is hard.

For this reason, and many other, some insist that it’s best to put our loved ones into a physical hospice or nursing home where they can receive round the clock care by professionals. But what do you do when the person dying is very clear on how they want to spend their last days – and it’s not in some facility, but at home with family and in familiar surroundings? How much are we going to let go of our normal day to day activities to allow them to fulfill their wishes?  Going that route may not be the easiest path, and may even seem impossible, but it is certainly very satisfying in the end.

If you are finding yourself torn by having to decide such a thing you may want to read Being Mortal: Medicine and What Matters in the End, written by Dr. Atul Gawande.  It is by far the best book I’ve read on End-Of-Life care. It’s one of those books I wish I had read while Kris was alive. Gawande focuses on the quality of life we can offer our loved ones as they are winding down and presents some inspiring examples and wonderful stories of people and nursing homes who are bravely innovating and developing ways to make a difference in someone’s remaining days.

There are no easy answers to much of what we encounter in caregiving but perspective and understanding help a lot. We live at such a busy and potentially stressful time in history. Families are blown all over the country and globe. The grown up children and even the parents have much to deal with just to keep a roof over their heads and maintain the complexities of our lives. The thought of having to take care of someone for an unknown amount of time can seem overwhelming and inconvenient. Normal living gets turned on its head.

Many of my friends are finding that not only have their parents lived a long time, but so have they! What can we really handle by ourselves? Will we have the support of the rest of our family when the time comes for caregiving? These are questions that don’t come up for discussions easily, yet it needs to be discussed sooner than later.  After reading Gawande’s book I believe there is growing change in the way we approach death that has an elegance and beauty to what might otherwise be the opposite, and much of it has to do with getting into those difficult conversations.

What Role Does Mindset Play? November 9, 2014

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MindsetI always keep a lookout for good, interesting journalism on end-of-life caregiving and I have to say that the New York Times has really delivered some great articles over the last several years. A few weeks ago another article caught my attention, not about caregiving per se, but about a subject that I believe needs to be part of the caregiving conversation; mindset and health.

The NYT article “What if Age is Nothing But a Mindset?” highlights the work of psychologist Dr. Ellen Langer, a Harvard psychology professor.  Back in the early 1980’s Langer ran a psychology experiment with a group of men, in their seventies, who were in good health but manifesting typical old age deterioration; walking with a cane, arthritis, stooped over, weakness, etc.  At the conclusion of the experiment, five days later, the men had gone through a transformation. “They were suppler, showed greater manual dexterity and sat taller… Perhaps most improbable, their sight improved. Independent judges said they looked younger.”  Today Langer is involved in bringing her work to even more challenging areas such as using her brand of psychology to try and shrink tumors in stage 4 metastatic cancer patients. It was at this point in the article that I started to think about her work in the context of my own caregiving experience.

What Langer did

In her original experiment Langer took this group of aged men, had them live together surrounded with nothing but items and culture from the heyday of their past. For five days they were immersed in the 1950’s, watching and reading the news from that time, TV programs from that period, magazines, music and so on – all from that period of time. Even their conversations remained in this period. The outcome? Reliving that time period impacted the mindset in which they viewed themselves – i.e. they were able to get in touch with their more vibrant and youthful selves.

The physical impact of that change in mindset appeared to have a direct effect as noted above. In a similar fashion Langer is attempting to bring a positive mindset to breast cancer patients by once again creating an environment that will have them think differently about themselves and their condition. As Langer describes it, even the very diagnosis of the illness appears to cause a mindset that brings on the symptoms the patient expects to feel. “You change a word here or there, and you get vastly different results”.

Now, even though I believe there is some truth is all this, I also know that in the long run, no matter what we do, we will not overcome death and disease. Still, the question it brings up for me is twofold: can our mindset actually prevent us from dying prematurely and during that extended period can we maintain a good quality of life? There are a lot of books out there about the power of our words and how those words affect how we view ourselves, resulting in habits, actions and quality (or lack of) of life. But how much of this is anecdotal and how much is scientifically proven? Nonetheless, I like the sound of it. It resonates with my own life experiences and I was consequently happy to learn about Langer’s work.

So what about us caregivers? mindset 2

Most of us who end up caregiving are not psychologists, doctors or professionals in the caregiving industry, yet we become involved in a dynamic with another individual that can be highly complex and overwhelming. At times it’s very simple because the love and care we feel comes easily and genuinely. That love guides many of our actions. But there are so many variables caring for someone that it’s easy to feel way out of our depth.  To do the smallest thing like roll someone over on the bed, can be terrifying when you don’t know what you are doing. But here is a whole other aspect, namely the psychological side of what’s going on. Add on top of that times when your loved one is delirious or unable to think straight and you’ve got some serious challenges in being assured you are responding in the best way.

But it’s not only us, what about those professionals who interact with our loved ones such as doctors, hospice and hospital nurses and aids?  I really loved the hospice nurses who came over to care for Kris but I noticed that their psychology varied. Some were more sensitive to what was said around Kris, others weren’t. Some brought up language in her presence that assumed death, others refrained. Those conversations that assumed death made me very uncomfortable. Not because I couldn’t handle it, but I was worried about how it was affecting Kris.

On one hand I see there is value in being realistic, but on the other hand I wonder how our “realism” affects the recipient?  I have met people who have overcome amazing odds. A friend in Florida was diagnosed with cancer and was told she didn’t have long. She mostly ignored it and went on living happily for another 15 years. Yes, this may be an anomaly, but it also makes me wonder about the toll our mindset has on our health and well being.

When Kris found out that the targeted chemo didn’t work on her secondary liver cancer and that the lesions had doubled in size, it felt like a death sentence was issued. Even the doctors said it wasn’t worth doing anything at that point. We both cried. It was like entering a world where hope was no longer valid.  I find it chilling that from that day onward her deterioration seemed to really kick in and escalate. Sure maybe it would have been the same even if she hadn’t received the results of her test, but I’ll never know.

Does caregiving only encompass making the person comfortable?  Or is there another aspect to this in which our words and mindsets play a bigger role than we think? I don’t profess to know the definitive answer to this, but I will certainly keep my eye on the work of Dr. Ellen Langer.

What are your thoughts on this subject? I’d love to know.

Here are a couple of Dr. Langer’s books:

Counterclockwise: Mindful Health and the Power of Possibility

Mindfulness

 

Walking the gray lines October 10, 2014

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fall leavesIt’s a day away from the third anniversary of Kris’ passing and over the last few weeks I find myself again reliving and reconsidering what took place.

One thing I discovered while being a primary care-giver was the unrelenting number of situations for which there were no easy answers, yet decisions needed to be made. Even no decision was a decision. Doctors and nurses have seen quite a bit, are well trained and are confident about what they are doing, but they don’t necessarily have all the answers. Clergy have also experienced quite a bit but many of their answers require belief. As a caregiver I was at times left in gray areas having to make decisions based on my own research (thank you Google), experience and observations.

Growing up I remember hearing quite often that we come into this world alone and we leave alone. Although I could think of instances in which this didn’t seem true (twins for instance) I could understand the essence of this saying. Over the years I have experienced that taking time to go within myself is definitely an individual endeavor (some people may want to call this “meditation”). When I go within no one gets to come along nor has any idea what’s going on for me. I have always enjoyed how this non-activity can make me feel complete despite the lack of any external stimulation. Kris and I shared this passion for going within. It wasn’t something we did as a team, it was an individual undertaking and the experience was individual as well. And though we didn’t discuss it much it was the basis for a deep bond .

I couldn’t help notice that as she was becoming increasingly ill that she spent a lot of time within herself. She never announced it. To anyone looking in, it would have looked like she was sleeping, but I could feel something familiar from her, and it wasn’t sleep. Occasionally I would interrupt her to make sure she was okay. I’d often ask if she wanted something entertaining, like for me to read her a book or play some music, but she almost never wanted anything. She was quite content to just lay there in silence for hours on end. The peace around her was so attractive at times I would quietly join her.

During these times, while lying next to her, I found myself contemplating what it would be like to pass on. What would I be feeling? What might my emotions be? One thing was clear, the feelings and experiences would happen to me alone. Even if someone was holding my hand, I would have to go through this process alone. Whenever my time comes it is going to be my own personal journey, just as this was hers. But, what Kris showed me was that it was going to be okay. It seemed as if some biological and psychological changes were happening to enable her to be accepting and ready. The news around us was no longer of any importance or interest.  I remember one morning learning that Steve Jobs died, but it was far too trivial to share with her.  She was simply being pulled gently away from me and everything else.

So what’s the proper balance for engagement? On one hand we don’t want a loved one to feel alone and uncared for, on the other hand I felt that Kris needed plenty of space so she could transition comfortably without distractions.  This transition, for lack of a better word, felt “holy”.  It commanded respect. It was a facing of reality. It was a process that no money, influence or power could overcome indefinitely.  It was something I had to bow to and feel my smallness. It was overbearing, mysterious and, in its own way wondrous. Wondrous because it was taking what we might consider frightening and was making it natural and gentle. The journey within may be done alone, but it’s not lonely.

Even though I was often by her side it was unclear if she really had any awareness of me. The body was there, but what I loved most about her was slipping away. Awareness seemed elsewhere with an occasional drift into our world to flash an acknowledgement with an angelic smile. She was going, but was I ready to let her go?

Kris

Kris

It’s only in retrospect that I wonder about this. At the time it was very clear that I had to give her room to be alone and develop legs to walk into a new world. Where is the balance? I’ll never really know and it’s impossible to ask anyone who’s made the transition. But as I walked that fine line it felt right to give her plenty of time alone so she could build momentum in the right direction. This seemed like the most helpful and respectful approach I could take. I believe from observing Kris that this aided in her own preparations for the final transition while providing enough love and support so she felt physically and emotionally safe to do what she needed.

This particular consideration probably doesn’t come up in the majority of caregiving situations. For me it did. But this was just one of many challenges that appeared each day and required my involvement. What makes these decisions so hard is that we don’t want to cause our loved one to suffer any more than they might already be. Yet while caregiving for someone dying we are often faced with things that are not exactly black and white.

Getting Things Right – Advance Care Planning September 21, 2014

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preplanning

During a recent conversation, one friend said, “I told my husband that when I’m too sick and frail, and I look ready to go, just blast me with a shotgun and toss me in the back yard.” She made us all laugh and lightened up what was becoming a dour discussion on end-of-life choices. But it also got me thinking about many of the off-the-cuff conversations I’ve had with people about what we want to happen when it’s time to wind down and pass away.

Such conversations usually end up being a sentence or two such as, “cremate me and sprinkle my ashes in the Hudson River.”  Or  “just bury me in the family plot and don’t make a fuss.” I can’t remember any depth to these conversations except for the ones I had with Kris. Inspired by the fact that her passing was a serious possibility, and because she was tenacious in understanding the nuances of things, a considerable amount of discussion and thought was given to this subject. But outside of that I can’t think of a single in depth conversation I had about this, even with doctors.

A  New York Times article recently reported on how insurance companies were now beginning to reimburse doctors for having end-of-life conversations with patients. With boomers now in their 50’s, 60’s and 70’s, this is probably a good thing.  Even Medicare is considering making it reimbursable despite its exclusion from the Affordable Care Act. With such a big swath of the population now looked at as “seniors”, any way to get this conversation going will be helpful.  But, I have to admit that whenever business comes into play with medicine I get suspicious.

Let’s face it, the insurance companies don’t benefit from paying out large sums to keep someone on constant life support. Yet, the hospitals do benefit. It reportedly costs over $10,000 per day to keep someone in the intensive care unit.  Doctors, who receive payment from insurance companies, or work with hospitals have incentives both ways.  There’s a lot of conflict of interest here. Polls show that a majority of people wish to die at home, yet 75% die in a hospital or nursing home. It makes me wonder why, and what it tells me is that I need to take control of the situation. By being clear, discussing it and thinking it through I can create a directive that reflects my exact wishes and ensures I will have someone I can trust to see it through.

Yet, even those who are clear about their end-of-life wishes and create legally binding advance directives can run across some unexpected complications. Earlier this summer Casey Kasem, the well known radio personality of the American Top Forty countdown, passed away. The papers were (and continue to be) following the turmoil around his death. In Kasem’s case he clearly documented what he wanted; his daughter was to be in charge of medical decisions and that he not be kept alive if it  “would result in a mere biological existence, devoid of cognitive function, with no reasonable hope for normal functioning.” 

Sounds pretty good. But I guess no one anticipated that his wife would hijack him from the nursing home when he was quite ill and then move him around North America to avoid detection. In doing so she could to keep him “biologically” alive and not follow his stated wishes. With help from the courts and by virtue of the directive, his daughter eventually got him back to fulfill his wishes except for the last part – to be buried in Los Angeles. News reports have it that his wife snatched his body from the funeral home and brought it to Norway. What a mess. Although this is hopefully an anomaly, when I hear such stories it makes me realize that even with an advance directive things can go haywire, so how about without one? The chances of us getting what we wish seem very slim.

What I found with Kris was that our conversations helped me quite a bit by taking out the guesswork. I knew she didn’t want to feel that her sickness and passing was going to be a burden for anyone (it never was, Kris!). She knew she wanted to wind down in the comforts of her own home in a tranquil and loving environment. She wanted people to be able to feel good about any final ceremonies. And she wanted to go through her last days with nothing on her mind to distract her from going within and departing as consciously and as openly as possible. Judging from her final weeks on earth I would have to say she accomplished what she wanted.

It didn’t surprise me that a study in the BMJ (British Medical Journal) concluded that “Advance care planning improves end of life care and patient and  family satisfaction and reduces stress, anxiety, and depression in surviving relatives.”  All this pre-planning can really help, it’s just a matter of getting it done sooner than later. For some help and a thorough overview on advance care planning, with some excellent links, check out the following document at the National Institute of Aging: Advance Care Planning.

Drops of Mercy September 14, 2014

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Photo courtesy of OneWorld MemorialsIt’s has been quite a while since I’ve written something for Conscious Departures. It’s not that I ran out of steam or inspiration, but rather this hiatus was brought on by a poor assessment of my own personal grief.

As many of you who write know, a blog piece of 500 – 1000 words can take anywhere from several hours to several days. I’m a bit on the slow side, so for me it’s usually a 2 day process. What that meant for me was reliving Kris’ passing with great depth for that period of time, every week, in addition to the countless other times that grief would pay an unannounced visit. I was still in too tender a state to take on the constant intensity and it became emotionally impossible for me to handle. It was clear I needed to take a break. But now, after a lot of reflection and time well used, I am finally able to write again.

It also helped that I initiated some dramatic changes. I completely scrapped the life I was living before and decided to start anew. As one friend who visited my home while I was still living in Las Vegas observed, “you are living in a mausoleum”. And I have to admit, that summed it up perfectly. Something needed to be done.   But it’s not that easy because grief is an unusual thing, it becomes like a friend. Although it’s so painful, it connects you strongly to the departed and I actually found myself looking forward to it. I didn’t, and still don’t, want to abandon it for that very reason. But grief also connects you to the frustration that your loved one is no longer around except in your memories and in your feelings. It’s like slamming into a brick wall. As I have commented so many times – no email response from the departed is forthcoming.

So now I am happily situated in Minneapolis where I’ve started a business that is more aligned to my current emotional and experiential makeup. My work naturally allows me to continue writing and providing content that would help people prepare for what is inevitable and certain; involvement in an end-of-life situation. One thing that hasn’t changed is my passion about the importance of people understanding what’s involved in an end-of-life occurrence so they will not be caught off guard like I was. I am not thinking we can ever be protected from it all, but we must at least come to grips with what we’re about to embark on.

I am still inspired to share my experience and do what I can to help others consider the implications of this touchy subject. I continue to have the pleasure of meeting many wonderful and inspiring people involved in caregiving during EOL periods who are dedicated to caring for a relative, parent, sibling or friend. These are people who find that a deep compassion and caring surfaces to transform them in unexpected but beautiful ways. It’s a community of people that I appreciate knowing and being a part of.  What so many of us have to share about this subject will inevitably make it a smoother, more gratifying and natural part of our existence, as well it should.

As for me, the change has been a good move. Instead of spiraling downwards I am once again thriving and gaining strength. To go on and live life to the fullest was what Kris had hoped I would do, and I don’t find it merely coincidental that I’m now living in her home town. Thankfully I have many wonderful friends who care and have been instrumental in making my transition possible. I am grateful for these little drops of mercy that continue to appear in my life in so many unexpected ways.

Well, Okay Then… February 24, 2013

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OLYMPUS DIGITAL CAMERAA good friend of mine mentioned Conscious Departures on Facebook last week and it generated quite a bit more activity than usual. It’s a little ironic because I have held back from posting anything on Facebook since I first published this blog site last March. For most bloggers this might be heresy especially since I have somewhere over 700 Facebook friends.

The reason for my reluctance has been mostly due to the purpose behind this blog, not because I am unclear about it, but because of my own discomfort to encourage people to spend any time focusing on death except as a very good way to put things into perspective. As I explain on the “about” page, I am attempting to get people to think about end-of-life (EOL) caregiving issues before they are smack in the middle of them. Why? Because that’s a horrible time to get up to speed. That’s what happened to me and I don’t want to see that happen to others.

Still, I am more inclined and comfortable to encourage people to think about life, so to get people to think about the dying process has been a challenge and the reason I haven’t broadcast this site too widely. Thankfully I have connected with some wonderfully dedicated and talented “caregiver” bloggers who’ve provided camaraderie and tons of encouragement to keep me going.

But now that the cat is out of the bag among my friends, it has forced me to come to grips with my discomfort. My conclusion is a non-deterred one; that I am not taking people away from focusing on life but just prompting them to take some time to prepare for what is inevitable. After all, when we go on a long vacation we always take the time to prepare without any philosophical fanfare. We hold the mail, maybe unplug all electrical items, call our neighbors to let them know to keep an eye out for the unusual, postpone our newspaper subscription and so on. A couple of major differences is that we don’t know when this vacation will occur and it’s permanent.

To quote Rosalynn Carter, “There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.” With caregiving being such a certainty, where is the much needed education? It’s out there but the encouragement… no, encouragement is too weak – the shouting out about the importance of it hardly exists – and I can totally understand. It’s just plain uncomfortable to verbalize urgency for people to focus on the implications of dying. It reminds me of the last segment of Monty Python’s The Meaning of Life when the Grim Reaper pays a visit to people having a dinner party. Everyone around the table is attempting to include the Reaper in their banal conversations, offer him drinks and so on until the Reaper gets frustrated and tells them he’s there to take them and declares  “I am death!”. One of the guests turns to everyone else and says in a very understated way,  “Well that rather casts a bit of gloom over the evening, doesn’t it?”OLYMPUS DIGITAL CAMERA

In a paper entitled Families and Elder Care in the Twenty-First Century, the authors note that, “For most of the nation’s history, caring for the elderly was a family affair carried out largely by women in the home. As the twenty-first century unfolds, however, elder care in the United States is an increasingly complex enterprise, with much personal care outsourced to paid, non-family caregivers.”

The way our society has evolved families are not as tight, women are making careers and families are smaller. When you combine that with a massive increase in the number older people (in the USA an increase of 11 times in just the last century), who are living longer and who’s number continue to grow, you don’t need to be a sociologist to figure out that we are in the midst of a wave in which either professional healthcare services are going to have to expand enormously, or families are going to end up taking up some of the slack – and they already are. Even an amazingly high number of young children are finding themselves as primary family caregivers today.

I was taught nothing about caregiving.  My impressions made it appear messy, complicated and something I was not hoping to ever do.  In my own imagination, and based on my experience, when a person became extremely sick they simply ended up in the hospital. There they could get around the clock attention and would eventually live or die. That’s the way my parents went – in the hospital. Caregiving for my parents meant showing up at the hospital, hanging out with them, talking with the doctors, running a few errands and hoping everything worked out okay. Both my mom and dad seemed comfortable enough.  But things are shifting; more people than ever want to die at home. They want to go peacefully, if possible, in a familiar and warm environment.

There’s a free online caregiving course called “End of Life” offered by Stanford University in which they refer to studies showing that approximately 80% of Americans would prefer to die at home. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home. A minority  of dying patients use hospice care and even those patients are often referred to hospice only in the last 3-4 weeks of life.

So who’s going to do all this “caring at home” when we are all so busy and so few?  It’s no surprise that only 20% of the people get to pass away comfortably at home, our system and culture (at least in the West) tends to push us in that direction. And for those who do I wonder what the experience is for the caregiver. I’ve noticed that most of the news articles you will find on caregiving, day after day, have to do with caregiver burnout. That should be telling us something.

Since having had my own EOL caregiving experience I have spoken to so many people who went through the same thing but with their own twist. Nonetheless, like me, they were unprepared and now, many years later, are still deeply affected by the experience. The grief that follows is understandable, but the experience of caregiving for us non-professionals is so often unexpected containing the sublime as well as unyielding strain and daily surprises. Afterwards you carry around powerful and indelible memories. The lack of knowing and preparedness manages to compound the difficulty and takes away from the entire experience being one of magic. Sounds surprising to use that word “magic”, doesn’t it? But EOL caregiving is just that – magical, and those who have been through it, and go through it daily, know what I mean.

OLYMPUS DIGITAL CAMERASo, though it’s far more comfortable keeping the topic of death under wraps, the situation is that we are all going to have to face a caregiving situation or be cared for. As a potential caregiver it is to our advantage to know what we are going to be dealing with not only physically, but emotionally and “spiritually” as well.

There’s a fear that focusing on death or talking about it may bring it on sooner. I also feared this. I never wanted to give K the feeling that she was terminal, and in my own denial I actually believed that she’d turn things around. Thankfully K was far more pragmatic. Even if it’s true that our mentality can make a difference, at some point it no longer does. And though preparing for caregiving may seem like something we can put off indefinitely, getting educated is important and something we must do. There’s little choice. It’s either sooner or later, and later means under duress.

So, I want to thank my friend Joan for posting a link to Conscious Departures on Facebook. I created this blog because I was thinking of my friends and family anyway. Since I am feeling quite passionate about being prepared early for an EOL situation I may as well be out in the open about it. And for those who are already in the middle of it I hope you are finding valuable support in your community and out in the virtual community as well. With hospice care and the growing wealth of on-line resources you can go about your task with greater ease. You can always check out my resources page for more.

Understand What it Takes To Care January 10, 2013

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OLYMPUS DIGITAL CAMERAWell, I’ve taken quite a bit of time off to regroup, enjoy the holiday and make some great connections.  But I’m feeling more strongly than ever to get the word out to friends and acquaintances about being ahead of the curve on end-of-life and caregiving issues, so it’s time to get back to writing. It may not be practical for some to get too far ahead of the curve, but many people are surprised how quickly they get blindsided finding themselves as a caregiver or being cared for. Almost everyone I’ve spoken with over the holidays is gravitating towards or in the middle of some kind of family caregiving situation. In my own experience, even with adequate time to get well informed,  I still found myself with many seemingly small tasks that were far more worrisome than I anticipated.

One day it reached the point, in K’s cancer evolution, that she needed a hospital bed. We have a nice large king sized bed but she was rolling around in it so much that you wouldn’t know where to find her next. At the end of one day I actually found her pivoted 90 degrees and scrunched against the wall. The hospice nurse recommended we get a hospital bed brought in to make sure she didn’t roll onto the floor and get hurt. Great idea, and something I would never have considered on my own. A hospital bed has bars on both sides, much like a baby crib, with the ability to raise or lower the head or legs. The hospital bed came along with the hospice services, which made it incredibly easy to do.

The bed was brought over and I had it placed in our bedroom. The guys who deliver the bed are fine to set it up but they are not qualified to move anyone onto it. K was not walking around at that time either, so it wasn’t a matter of helping her shuffle over and hop in. They said I needed to call the fire department to have her moved. The fire department!? I just couldn’t imagine having the fire department come roaring into the neighborhood, with a team of big beefy guys stomping into the bedroom to move her. No way I was going to do that, it would have totally freaked her out.

I gave it some thought and decided to move her to the bed myself. I am strong and fit and K was down to a very light 80 pounds. My biggest concern was her neck because she barely had the strength to life her head, if at all. I worried that in her frailness her neck could snap or strain if I did not support it well during the move.  I stood there for a while strategizing how to do it with the utmost care. First I made sure the hospital bed was all set with new sheets, special cushions and a pillow. I let the bars down and took a deep breath. This was a small thing but I can’t tell you how risky it felt.

I went over to K. She was conscious and staring at me. I told her what it was I was about to do and why. Not seeing any any alarm or revolt in her eyes signaled she was game. I took a deep breath and decided to go for it. I got under her carefully with my arms, cradled her head on my chest, so that it wouldn’t flop backwards, and gently put her to rest in the hospital bed. Everything was fine and it took less than five seconds. For such a small thing it was an amazing bonding experience. Well, it may seem like a small thing but not when you are in the middle of it and untrained. Looking back I should waited and called our designated hospice nurse for advice. I was very lucky that it worked out okay. I shudder now when I think about it.Jan 10 13 P2

A few days later, while caring for her, I needed to lower the bars of the bed so I could maneuver more easily. I pulled the latch to let the bars drop down but a little red flag in my head went off stopping me from letting them drop full force. The bars had some serious heft to them so I lowered them gently all the while watching her face. After easing the bars down I saw K’s face take on a disturbed and agitated look. Clearly something was wrong. Then I noticed – I had lowered the bars onto her right wrist!  She had been laying there grasping the bars as if she were holding someone’s hand, but I hadn’t noticed, and so the horizontal support of the bars landed on top of her wrist. After seeing her expression it took a moment to figure out what the problem was and I immediately lifted the bars back up. I was terrified that I may have broken her wrist, but luckily all was well and the scowl went from her face. Thankfully, not only had I lowered the bars slowly but there was tons of soft padding between her hand and the bed. That one moment of being slightly conscious about making abrupt actions may have saved the day. Still, I was totally distraught and emotionally drained about this for days afterwards. K was very lucky to escape the potential harm of my amateurishness.

Back in October the AARP Public Policy Institute and the United Hospital Fund came out with a study entitled Home Alone: Family Caregivers Providing Complex Chronic Care that had some discomforting findings. In the executive summary it says, “Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals.” And the report shows that many non-paid caregivers are frightened and overwhelmed with the level of care they end up having to provide these days without training.

I can see great value for today’s family caregiver to get some basic training. It was something that would have given me more confidence and ability to respond more competently. Caregiving someone can be too complex to simply consider winging it. If anything terrible happens to our loved one due to our own inexperience and lack of training we’ll find ourselves haunted by it for quite some time.

I wish I could say there’s a lot of training support available but actually it’s not that easy to find unless you are ready to spend a lot of money. I’d suggest the first place to look for basic training programs would be with your local hospices. From my limited experience, and from speaking to others, you will find they are aware of many resources, offer quite a bit of services and will go the extra mile to help you.  I found that some community colleges offer courses which, although they cost money, look like they are a good value.  Also, check in with any universities or medical schools nearby. For instance I found that the U of Nevada School of Medicine held a free workshop for elder caregiver training specifically for the family caregiver. Programs like this may happen frequently, but you need to be proactive in seeking them out.

If anyone reading this has other ideas as to how a family caregiver can get some basic caregiving training without breaking the bank it would be much appreciated. Please weigh in.